people + things: processing MedicineX 2016

I always set alarms. Even if I go to bed with no need to get up and an alarm set for 11 am, I always set alarms so SleepCycle does its magic. Last night, I fell asleep amidst the beginning #MedXHangover, without setting an alarm. Ten hours later (I woke up a few times, briefly), Fitbit informed me I went to bed at 11:13 pm, and slept for exactly ten hours. That’s what happens when on the last night of Stanford MedicineX, fellow Canadian, Bill Swan, has a brilliant idea and we stayed awake all night mind mapping while waiting for our 3:55 AM shuttle to the airport, along with Steve—the reason I was at MedicineX in the first place, to be his guide—and Guide Dog Murray (who did not stay up all night because that dog does not even stay up all day.)

I got out of bed, to finish watching my friend Ryan’s documentary about Chronic Fatigue Syndrome (ME/CFS), Forgotten Plague, with my MedX mug beside me, in use for the first time.

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Ryan and I met in 2014 at MedX, and I had the privilege of watching an unfinished cut of the film back then—it’s amazing, and even more so to see the transformation within the documentary. Go watch it.

http://i1.wp.com/farm9.staticflickr.com/8417/29526648800_83f83f2628.jpg?resize=500%2C375&ssl=1

Ryan and I on Sunday night by the pool.

I then tried to put my jeans on inside out and was almost successful, and then emptied my pockets of the dollar bills that accumulated there (like pennies, this Canadian can’t stand dollar bills).

 

“We probably look like hobos.” –Bill. #medx #brainstorming #allnighter

A photo posted by kerri (@kerriontheprairies) onSep 19, 2016 at 1:32am PDT

I’ve failed in the past at adequately summarizing MedicineX on my blog: it is too big for the words that I have, as I said in this video. So instead, this time, I will attempt with a bullet point list, in no particular order. I don’t have a good track record over the last 4 years and 2 MedicineX conferences I’ve attended of expanding on the stories much, but maybe this way I can have some hope.

  • Canadians.
    Back in 2014, Rachel and I started up the #MedXEh hashtag for our fellow Canadians to share in the story with us, from the Canadian perspective. This year, I met so many more Canadians in the past, and not just patients. I am looking forward to grabbing coffee with Dr. Greg Schmidt from here in Winnipeg (represent!), and connecting again with Bill and Amos from MemoText next time I am in Toronto, after learning about the technology they are working on for asthma management. Canadian Mental Health advocate Mark Freeman and I will, I am sure, have some good chats in the future. I am happy to have found so many people from this country, this healthcare system, engaging in this discussion.

    http://i0.wp.com/farm9.staticflickr.com/8155/29736868321_e67c586326.jpg?resize=500%2C375&ssl=1Thanks to Uber Driver Sean for pulling over to snap this shot of Dia, Bill and I!
     
    http://i0.wp.com/farm9.staticflickr.com/8233/29193203673_3d68ec2651.jpg?resize=375%2C500&ssl=1 

  • Connections. 
    It’s so cool when someone you only know on Twitter walks up to you and exclaims your name, and you greet one another with a hug. It’s even better when you can exchange stories with patients you’ve just met and know nothing about—your quick, 30-second elevator pitch of yourself, if you will. MedicineX is amazing for bringing patients into the conversation, but also for letting us have those conversations amongst ourselves with the ample networking time. Sometimes, you walk into a room for a presentation, and the speaker greets you by name because they’ve been seeing your tweets flying by on the hashtag, or IDEO p. Patients are not just patients, and students are not just students, to most of the attendees—whether healthcare administrators, doctors—we are there to share our expertise, too. If you are willing to share your story, and be bold, your story is valued.

    http://i0.wp.com/farm9.staticflickr.com/8598/29193262803_15a5de60e6.jpg?resize=500%2C375&ssl=1Healthcare Engineer Yang Fang and I, on a non-MedX meetup this weekend. He’s been working on a predictive asthma tracking app/site for several years now, keeping patients—like me—at the centre of his work!
    http://i2.wp.com/farm9.staticflickr.com/8546/29819898005_e047b8459a.jpg?resize=500%2C375&ssl=1http://i0.wp.com/farm9.staticflickr.com/8228/29192176734_4262e0fed6.jpg?resize=375%2C500&ssl=1Thanks to Random Guy Who Borrowed Bill’s Phone Cord at the Sheraton Lounge for his photography work! 
     

  • Conversation.
    If you don’t know someone at MedX and find yourself sitting beside them, it’s not uncommon to hear “Hey, what’s your story?” I found that this year more than in 2014, I spoke with a lot more different people than in the past—like caregivers, doctors, designers—and not just patients.
    Story is important at MedicineX. And then story, becomes solution: how might we is one theme that is commonly used when someone illustrates a problem they have encountered, and then the community dreams big with the realization this is not right, let’s fix it. (See also: stories, below.)
  • http://i0.wp.com/farm9.staticflickr.com/8016/29736914531_f1c4e463b7.jpg?resize=500%2C375&ssl=1Design.
    As Nick Dawson (one of my favourite ever presenters, and people, who told several of us “Come to DC and work in the design lab!”), lead the closing exercise, he said “How might we make research more delightful?” This is a common thread: how might we take something that’s okay, or good, and make it into something ridiculously great? No holds are barred, and this is a theme that IDEO has made an Integral part of MedicineX. How might we.
    http://i1.wp.com/farm9.staticflickr.com/8465/29193310403_bdd2e8ab80.jpg?resize=375%2C500&ssl=1Nick, for some reason behind the couches.

    Steve participated in the IDEO Design Challenge (video to come), as did Dia, where Bill participated in the Entrepreneurship track—all based on how better solutions can, and should, be created to solve problems caused by poor or unimaginative design. 

    http://i0.wp.com/farm9.staticflickr.com/8071/29736913531_8637a8b808.jpg?resize=375%2C500&ssl=1
    Technology is a huge player in MedicineX, but as both seen in the IDEO design challenge and throughout the conference, sometimes it’s not about tech at all, it’s about innovation, and it’s about “co-creation” with everybody involved (as much of a buzzword as that may have been). People need to play with design.

    http://i0.wp.com/farm9.staticflickr.com/8207/29706489392_ee3a8c4eb4.jpg?resize=375%2C500&ssl=1 

  • Stories.
    Every story someone at MedicineX brings to the table is important—even if you are not a presenter, you will at some point be asked “What’s your story?” (unless you are like, chilling in the wellness room being quiet the whole time). While I used to feel like it was mostly patients being asked their stories, I often heard patients turning to a doctor or a designer, or another attendee to ask “So, what’s your story?”

    Everybody has a reason for doing what they do—from Yoko of Sen Sound sharing and gathering stories about the last sounds attendees wished to hear, to the folks at IDEO, to every app developer or hospital administrator or insurance provider who realized “This isn’t right, let’s do better,” and went with their heart and gut feeling, even if it wasn’t the status quo. Everybody has a story—and the MedX community embraces them.

This is what MedX 2016 came down to for me: Canadians, connections, conversation, design and stories. It’s left me exhausted (that might be the all-nighter) and energized to do more, create more, be better, be more bold and transparent, and explore more areas I haven’t even begun to consider. 

There are more stories left to be told—if I’m not too wrapped up immersing myself in making things happen :).

quantify this thursday: quantified asthma.

Today my friend Sara asked me about my favourite asthma tracker app. If you’ve read my post, Technology, Self-Tracking and Asthma on Asthma.Net you’ll know that answer. (Disclosure: they pay me money but don’t influence my views, which is a sweet gig).

Pretend spoiler alert: I don’t like any asthma apps out there. (If you’re looking for one, though, read the article. I tried to look at a variety of aspects from price to what data was collected to design/user friendliness.)

So, with no coding skills what-so-ever, I set out to build my own solution. (I seem to do that.) I’m still working on it, and it’s far from perfect, but here’s what I’ve got so far. Keep in mind, I’ve got dozens of hours of trial and error behind this, and once I got it down, I used it (in the fragments created to that point) for maybe about six weeks before I hit a lapse, or burned out on it. I think, also, it will be easier (maybe not as effective, but easier) when I’m not at the cabin every weekend.

Element One: Google Forms/Google Sheets.
I started this whole thing off with a simple form for myself to fill out regarding my asthma symptoms (1-5 scale) and meds, trigger exposure, as well as my peak flow, FEV1, and oxygen saturation (cause why not?). I tried to tie symptom logging to taking my meds, as well as when I felt an increase in symptoms, so that it wasn’t biased by only reporting increased symptoms (which it still is, of course) and attaining a “baseline”. Unfortunately, I started this project when I was having a bit of a struggle with my asthma control (thanks a lot, rain and humidity).

I also used DO Button from IFTTT for a time to log my Ventolin use. Then I realized this was complicating things as I had to log each puff separately. This is where I began using QR codes.

Element Two: QR Codes.
I usually do not like QR Codes for whatever reason. I really would have preferred to use NFC tags, but, the iPhone 6 doesn’t feature a NFC tag reader like Android does (and whatever future iteration does, it’s ApplePay specific). So, QR Codes have to suffice.

http://i0.wp.com/farm9.staticflickr.com/8858/28632516841_d84d5bf912.jpg?resize=500%2C375&ssl=1

I created individual, colour coded (note the border) QR codes for each of my inhalers (and my Concerta bottle. And the nasal spray I realize I haven’t taken in forever). I made them small enough and simply attached these to my inhalers with tape (I had to scratch the shininess of the tape away but it worked okay after that, and after I learned not to put the codes on curves in the inhalers, which is difficult with Qvar). The QR codes link to individual Google Forms for each medication. I hit the corresponding button for the number of puffs taken (or, in the case of Concerta, one pill), and then hit submit.

My Ventolin (the blue inhaler above) you’ll notice has two QR codes attached. the one on the cap is for the Ventolin itself, the one on the side is for the symptom logging sheet. The peak flow meter has the link to the sheet to log PEF and FEV1. I also have the symptom barcode by my bed (where my peak flow meter usually lives and where I usually stand to take peak flows).

http://i1.wp.com/farm9.staticflickr.com/8698/28677949016_bb0d9defd3.jpg?resize=375%2C500&ssl=1

It’s not perfect, but it’s kind of fun. And fun, in a twisted, nerdy sort of way is the motivator here. If it’s not nerdy fun, on my terms, it’s not happening. I log for myself, and my doctors don’t really pay much attention to my PEF/FEV1 results, nor do they ask I take them. Which I am okay with, since it lets me not get burned out on numbers.

I got Launch Center Pro for iOS for this reason, so I can swipe down from the Today(/Notifications) Panel and hit one button to launch NeoReader (my favourite of the free QR code scanner apps I’ve found), which I outfitted with a cute pink rocket ship icon thanks to Launch Center Pro. Because I have to make it fun, of course. What’s not fun about a pink rocket ship?

NeoReader also has a history option, so if I’m somewhere the code isn’t reading well (like the cabin), or the light is dim (sometimes with the tape the bright iPhone light doesn’t help) I can pop it open from history. Usually the code works and is faster, though. But, like all QR codes, sometimes it just doesn’t scan. I also had to cover the pharmacy provided barcodes with tape because often NeoReader tried to pick up the pharmacy barcodes instead of my QR code.

http://i1.wp.com/farm9.staticflickr.com/8437/28094826083_1db53eff2e.jpg?resize=375%2C500&ssl=1

I now have all of these QR codes importing data into different pages on the same Google Sheet.

Element Three: IFTTT.
For like, years now, I’ve had weather pushing itself to Google Drive for this reason. I also, I think, have humidity reports going there so I can correlate my asthma symptoms with humidity percentages and temperature.  

What I’d like to add.
A better summary of what I’d like to add next will be in an upcoming Asthma.Net post called “Quantified Asthma”. However, aside from NFC tags (which is kind of impossible unless I get my hands on an Android device—if anybody has one kicking around they want to send my way for Quantified Self purposes, let me know ;)), I’d like to be able to pull pollen counts automagically from somewhere but that looks impossible from Canada (I don’t have pollen/mold allergies per my testing, but it would be interesting to see if these have any impact on my breathing anyways, like particulate matter). 

Finding trends.
Like I said, I had a pretty crappy bout of breathing going on when I started this project. But, I’d like to grab a week or two a month where I log (since I can’t expect myself to do it all the time without burning out) so I can see differences between seasons. I used Datasense, Sheets and Excel to play with my data, but Datasense is hands down my favourite. I haven’t taken a single data analysis course, so, this aspect has got to be pretty user friendly for me, and, Datasense is a lifesaver for that. Thanks, Intel!

So, that’s it for now. 

verses, and verses

kerri   August 1, 2016   No Comments on verses, and verses

Eleven years ago this week, I went to camp for the first time. Eleven years ago right now, I would have been asleep after my first day at camp. Determined to ignore the bible aspect of bible camp, I hung out with a group of girls who were maybe or maybe not any more interested in God than my own interest level of zero. A handful of these individuals, I still have on Facebook—all very different people than they were eleven years ago. Like I was, like I am. I left there still hardened. I didn’t believe God existed, but I think I left camp with a bible of my own. That bible, I am pretty sure, came camping with me the next week, whether or not I opened it I can’t recall. It still sits on my bookshelf, now amidst a handful of other bibles.

Over the coming weeks my heart began—or continued—to question and the frozenness began to melt away. Exactly a month later, I felt my world turning upside-down, and then Jesus reached in and righted it.

Now. This past week, this past weekend, my heart has been stirring again. Questioning. Opening. Eleven years later, here I am: alive, with as many questions and okay with it, and for the first time in awhile, actually ready to explore, actually ready to attempt to try this again. Excited about it, smiling about it.

it’s okay to breathe as deep as you pray
your future with Me is safe
you sing with My heart when you pray

here you are down at My feet again
handing it over to Me again
right where i want you to be again
I love you, please see and believe again

I love that you’re never satisfied
with face value, wisdom, and happy lies
you take what they say and go back and cry
you’re so close to Me that you nearly died

they don’t have to understand you,
be still.
wait and know I understand you,
be still.
be still.

here you are down at My feet again
handing it over to Me again
right where I want you to be again
I love you, I love you, I love you
here you are down at My feet
handing it over to Me
right where I want you to be again
I love you, please see and believe again 

right where I want you to be again
see and believe. 

again, flyleaf (austin city limits version)

Again. Again again again. As many times as I wander, I will surely come back one more time.

my hands are burning again tonight
my heart’s awake but i don’t feel right
oh, i can feel the heat rise.
if i could stand up and face this light
tearing apart my old disguise
but i can’t open my eyes

still i see You

my mouth is cold, my body whole
i may explode, but You feel like forever
and i am temporal, You’re a temple
i may explode,  but You feel like forever
i’m falling over and into You
i am consumed, but You feel like forever

i can’t stop shaking as You come close
i wanna run, but i want You most
is this what it means to die?
i hold my breath as i wait on You
longing to follow Your every move
i’ve never been so alive

still i see You

my mouth is cold, my body whole
i may explode, but You feel like forever
and i am temporal, You’re a temple
i may explode,  but You feel like forever
i’m falling over and into You
i am consumed, and i know You’re forever
yeah, i know You’re forever,
oh God, it feels like forever

i am consumed and You feel like forever
but You feel like forever
i’m falling over and into You
i am consumed
and You feel like forever.

feels like forever, lacey sturm.

We know this, that our old self was crucified with Him, so that the body of sin would be rendered powerless, so that we would no longer be enslaved by sin; for the One who has died has been set free from sin. Now if we have died with Christ, we believe that we will also live with Him.

Romans 6:6-8 (MOUNCE)

Teach me and I will be silent; Make me understand how I have gone astray.

Job 6:24 (ESV)

contemplating You is like a dream
i never wanna wake up when i finally see
a perfect circle turn in orbit
following a perfect path,
from Your perfect hands
when i look into Your eyes,
it’s a world i can’t believe
i can see my destiny to be like You.
whispering fingertips, lay Your fingerprints all over everything. 

whispering fingertips, flyleaf 

faded reflection: last week, from now.

I spent last week at the cabin.

I spent some time on the water in the kayak, some time reading [new books: Evolution, Me & Other Freaks of Nature, On My Own (Diary of a Teenage Girl), The First Part Last (Heaven #2) (unsure of what Heaven #1 is); reread Falling Up (Diary of a Teenage Girl) although i remembered none of it), and continued on Islands and Insulin.

Something also sparked in me to pick up the Bible again. What a concept for me. Picking up the Bible, in this case, was putting the Bible Gateway app back on my phone. And here’s the thing, I was actually excited about it.

I journaled. Not a ridiculous amount, but I got my head back out of me or back in check in the way that only writing seems to do for me—really, the best therapy. I considered stuff I need to work on, and “iterations of myself I need to get back to”. Like the whole exercising/nutrition/journaling/mediating/praying thing.

I saw a sunrise—it moved me to stumble back to my bed on the way back from the bathroom at 5 AM for my phone to take a picture—to not miss the moment and not think it was just a dream in the morning.

http://i2.wp.com/farm9.staticflickr.com/8523/27984665303_fe893a1c51.jpg?resize=500%2C375&ssl=1

I created. This was, actually, before the sunrise sighting.

http://i1.wp.com/farm9.staticflickr.com/8607/28568145586_0c68c98255.jpg?resize=387%2C500&ssl=1

I played mindless games (actually, Cooking Fever is kind of stressful, my goodness), and looked for Pokemon.

I tried to be present, mindful, as much as my lack of routine and ADHD allows.

http://i0.wp.com/farm8.staticflickr.com/7663/28568148226_7080637c1b.jpg?resize=375%2C500&ssl=1

I did some work when I felt like it. It’s part of my life, no matter how much on “holidays” people kept saying we were on. I chose to not be on vacation for the times I spent working. It’s easy when you like what you do for work and can work anywhere.

It was really, though, about coming back to where I need to be; about reflecting on self-care and seeing what I want more of in my life. And, I found a lot of good stuff in the process—stuff I need to work on. Like talking to God and seeing Him in my world—opening my eyes and allowing Him to open my eyes.

Edit: After I published this, I found this live set from Lacey Sturm on YouTube, at one point she says, “God is always pursuing you, but do we always pursue Him?” 
I think my answer is obvious; but that the question is perfect.

i feel Your eyes crawling over me
as though i am something more than me
but i don’t have anything good enough to say
i did not make myself this way

i’ll show you what He did
but i won’t take the credit
it’s not mine anyway
i just held the pen that day

and i don’t deserve this
this time right now
it’s not something for which
i can take the bow
and i don’t deserve this
it wasn’t me
i can’t take glory
for something that i can’t be
i don’t deserve this

i know what perfection is like
and i cannot stand before its might
and i’m so far from what You think that i must be
i just drown myself in mercy 

and all the art that i supposedly create
is simply a faded reflection of something He’s already made. 

penholder, flyleaf

But the further I go, the further I wander, the more I realize I need God. My friend Jessica posted a picture on Instagram last week that I needed—it said “Prayer is not a ‘spare wheel’ that you pull out when you’re in trouble, but it is a ‘steering wheel’ that directs the right path throughout life.” This is something I know, but I fall off track, and a reminder I need. I want to be well.

my scars are Yours today, this story ends so good
i love You and i understand that You stood where i stand
[thank You.] […] no matter what You’re going to break my shell.
i’m done healing—i’m done healing
i’m sorry, flyleaf 

Oh and totally out of the vibe of this post, but this makes me laugh so much:

http://i0.wp.com/farm9.staticflickr.com/8447/28600570735_d85e96b480.jpg?resize=398%2C398&ssl=1

Such doge.

reading with my ears: on (audio)books.

Last year, my friend Beth (founder of Smart Girls with ADHD) shared her affinity for audiobooks on her blog.

I disagreed completely. You can’t listen to music while reading an audiobook, and I like blocking out auditory distractions with music (well, okay, you can, but that requires wizardry). I’d tried one audiobook around that time, Drums, Girls and Dangerous Pie, and while the story immersed me, I preferred reading its sequel After Ever After as an eBook (I ended up also buying Dangerous Pie as an eBook to re-read). Plus, I can read with my eyes just fine (I mean, the whole ADHD jumping paragraphs bit and rereading stuff is annoying but hey, whatever, that’s my life.)

Well, here we are a year later. And I get it.

ADHD/LD and Reading: Earphones

Guys, you can play games on your phone while reading audiobooks. You can walk around the mall while reading audiobooks. If your fellow passengers aren’t too chatty, you can read audiobooks on the bus even if you have motion sickness (which I do not, but whatever, I can still look for my stop since the speakers do not always work, ahem Transit). These things are all great for mind-wandering ADHDers who need to keep some part of their body moving beyond flipping pages, and multi-task to a degree to focus… And so we’re more likely to not miss our bus stops maybe, but that happens regardless so I’m not holding my breath on audiobooks helping that too much. 😉 Sometimes I have to rewind, but OverDrive (the player my—and many—libraries uses) has a skip backwards 15 seconds button just for the spacing out times or the people nearby getting too loud times. Oh, and recall that they said in my assessment that I’m more likely to retain information that I get through the auditory bit of my brain than the visual bit.

EDIT: Oh, and you can play Pokemon Go while reading. Heyyyyo.

IT ALL MAKES SENSE.

I set myself a goal to read 40 books this year (last year I think I tried to read 75 books and failed, obviously, reading 30, so 40 seemed like enough of a jump). Except now it’s July so we are more than halfway through 2016 and I’ve read, um, not even half. (If you want to bug me on GoodReads, be my friend!)

Here’s what I’ve read so far:

  • Freak the Mighty (Rodman Philbrick)
  • Smiling Mind – Mindfulness Made Easy
  • A Mother’s Reckoning – Living in the Aftermath of Tragedy (Sue Klebold)
  • The Summer Before [the Baby-Sitters Club] (Ann M. Martin)
  • Shot in the Dark (Janet M. Whyte) [Audio]
  • Every Day (David Levithan) [Audio]
  • After (Amy Efaw) [Audio]

Here’s what I’m in the middle of:

  • Islands and Insulin (Erin Spineto)
  • Millersville (Brendan Detzner)

Some catching up is in order.

Maybe with my ears.